This is Olivias story...It was June 2015. I had noticed that my not quite one and a half year old Olivia was having some trouble walking and that her left ankle was swollen a bit when i was putting her sandel on. I took her to the ER at St Josephs thinking she may have fractured it when she tripped in the parking lot at Superstore earlier in the week. There was no fracture and we went home. The next morning was to be her first day of daycare. That Monday morning my baby tried her hardest to stand up in her crib like she had done every morning for months. She couldn't and kept falling back down. She tried so many times. We went to the ER at the Regional thinking that something had been missed. The orthopedic surgeon wanted to see us again in a week and didn't have any concrete answers for us. When we saw him a week later she had not improved. It was then that he told us he thought it might be juvenile rheumatoid arthritis which was something we had suspected thanks to Google search. We saw the adult rheumatologist in July and she confirmed it. By this point her right knee was also swollen like a softball and she had regressed in her walking because of the pain. She was started on naproxen twice a day which did seem to improve her symptoms a little but left her covered in bruises. We went to the IWK in August and Dr. Stringer suggested we do steroid injections in her knee and 2 joints of her ankle. This was done in September and took away her swelling and symptoms over time so that by March 2016 she was taken off her medication. All sas good- no symptoms, no complaints of pain, ahe was regaining mobility and catching up to her peers. We prayed for remission of her disease which is 2 years off of medication.
That all changed December 2017 when we were 3 months from our goal. Olivia is ANA+ and had a small number of joints affected at diagnosis which means she is at risk of developing uveitis- inflammation of her eye which can lead to cataracts, glaucoma, vision problems and blindness. We see an ophthalmologist evey 3 months to check her eyes and all had been good until then. She had inflammation in both eyes. We did steroid eye drops for 6 weeks and it was gone when she was rechecked in early February. This week we found out it is back again in one eye.
Olivia was diagnosed at one and a half. She is ANA positive. She is in the highest risk category for uveitis and due to this she faces potential severe complications to her vision in her life. She just turned 4 in December. She cried when she found out she had to do eye drops again. She asked me in the car if she ate more carrots, would it help her eye? It took eveything in me not to cry when she said that. She is 4 and told me the whole way to the pharmacy that this sucks so much and that it wasn't fair. She is just 4. Please donate or participate in this walk. Chances are you don't know someone with juvenile rheumatoid arthritis but you probably know someone with a form of arthritis.
UPDATE: Olivia is still on prednisone eye drops. Weve been having a tough time getting this flare up to go away. As a result her eye pressure increased and she was started on drops generally used for glaucoma patients. She is going to be starting methotrexare in the next few weeks which she will get weekly by injection
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